Logan was born in 2007 alongside his twin brother Austin.
Soon after, Logan was diagnosed with Sanfilippo syndrome.
As Logans mom, Noelle, described: Sanfilippo syndrome is a terminal, neurodegenerative rare disease.
They suffer from seizures and movement disorders, joint pain, and have a short life.
The average life expectancy is mid to late teens.
The news was devastating to the whole family.
We were told there was no treatment or cure.
We had never heard of Sanfilippo Syndrome.
We grieved Logans future, wrote Noelle.
Logan was born in 2007 alongside his twin brother Austin.
Her son was in the process of getting an experimental stem cell transplant.
At the time (2010), there was nothing else out there to help these children.
Although it is not considered a treatment, we do believe it has helped Logan.
We were wondering how the boy communicates with his family nowadays.
Noelle responded: Logan lost all of his speech by the age of 10.
He mainly communicates with body language and sometimes with something called a Picture Exchange Communication System (PECS).
The main role we play is educators.
I answer questions that people have about the disease.
But I also share our lives living with Sanfilippo syndrome.
I share the struggles and happy moments.
All of this is awareness.
With such a rare disease, awareness is extremely important.
The more people who know about Sanfilippo syndrome, the closer we can come to finding a cure.
